“Ever. I’m not really sure how this works.”
“Well, there’s no formula. Some people have been coming here for a while, some not as long. You can choose to share yourstory, but you don’t have to. Just be willing to listen to everyone who does.”
That sounds easy enough.
I follow her to the middle of the room, grabbing a chair. As everyone files in, there’s a calm quiet that settles over the room.
“Alright, let’s get started. Welcome to everyone returning and new. How ’bout we dive right in and open the floor? Does anyone have anything they’d like to share?” Kaylan poses the question to the group.
A man named Carlos is the first to speak. His wife has lupus, which has led to severe damage to her kidney, and they’re on the transplant waitlist. “It’s been four years, and we’re still waiting. It feels like we haven’t gotten anywhere. Georgie is always so optimistic, and I love that about her, but I’m scared. I’m scared and I can’t tell her that because I don’t want her to be like me. I want her to keep being fearless. I don’t know, I feel like I come here and say the same thing every week and it helps for a little bit, but the feeling always comes back.”
“And that’s okay,” Kaylan assures him. “Your concern for Georgie is valid, and for as long as you’re dealing with this, that fear isn’t gonna go away, right? But the point of this group is for you to have somewhere to voice those fears and know that you’re not alone.”
The group nods along with her.
I feel a kinship to Carlos. I understand that fear of the unknown, fear of the inability to prepare. It affects every interaction you have with that person.
A woman named Rachel is the next to share. Her partner has Cogan syndrome, which has led to him losing his hearing. “So, John and I just found out that we’re expecting.”
The group erupts into cheers and congratulations. One woman snatches Rachel up into a hug, rocking her side to side while tears stream down her cheeks.
Kaylan hands her a tissue when she sits down. “Thank you, guys. We’re really excited. Well, we’re trying to be. The insurance is still givingus a hard time about approving him for the cochlear implant, and so the other night, John broke down crying. He just kept signing, ‘What if I’ll never be able to hear our baby’s voice?’ I didn’t know what the fuck to say to that!” She holds the tissue up to her eye as she sucks back a deep breath. “He has really taken this disease in stride. He accepted the hearing loss as part of his life, and then there are times like this where it hits him what this disease has really taken from him and it breaks my heart all over again.”
A few nod in understanding. Kaylan offers her some words of encouragement.
A woman named Helena coughs softly. Her focus seems to be on one particular spot on the floor, but then she looks up at everyone and offers a kind smile. “Most of you know my daughter has MS.”
My ears perk up at that.
“Last night, I held her while she cried for what felt like hours because she got into a fight with her friend. Her friend Sidney, who I want to point out I’ve never liked, got mad at her because Iris was too tired to play with her. She had just missed Sidney’s birthday party over the weekend because she was having a bad day, so Sidney wanted her to come over and play yesterday to make up for it. Iris was still too tired and that really pissed Sidney off. This girl accused my baby of being selfish and not caring about her. Iris was just sobbing in my arms wondering how she could fix things and all I wanted to do was rip Sidney’s throat out. They’re only ten, so I get it. Sidney doesn’t understand Iris’s disease. None of her friends really do. It’s hard for them to comprehend that Iris even has a disease when physically she looks to them like a typical kid. But why should Iris have to shoulder the brunt of their lack of understanding?”
Helena is out of breath by the time she’s done speaking. My heart goes out to both her and Iris. Bailey didn’t get her diagnosis until she was twenty, so it was a little easier for her to articulate what was happening to her body to those around her. Iris probably barely understands it herself.
Her story makes me feel compelled to share mine.
“Hey, I’m Micah,” I start. “My sister isn’t speaking to me right now. She also has MS.” I look over to Helena and she gives me an earnest nod before I continue. “She has relapsing-remitting MS. I’m told it’s one of the more common types of MS, as if that gives us any sort of comfort. She’s been in remission for the last year and a half, which is great, but I find myself always waiting for the other shoe to drop. I think my problem is that I can’t fix this. I’ve always looked out for my sister, but with this there’s no blueprint on how to handle the disease. I know no case is exactly the same, but I wish I could know what to expect. I can’t predict when or if she’ll relapse. I can’t predict when the disease will progress. If I don’t know what’s coming, how am I supposed to know I’m doing everything I can?”
For a moment, I forget other people are in the room; I’m just spilling all my fears out loud to myself. “She’s a dancer. All she’s ever wanted is to choreograph for artists and go on tour. But when she got her diagnosis, she scaled back on that. At the time, she was in the thick of her symptoms and her body couldn’t manage it. Now that she’s in remission, she can. And she has an opportunity to do just that, and I shit all over her dream.”
When I held her as a baby, I vowed to always protect her and fight for her dreams. I never thought I’d be the one her dreams would need protection from.
I’ll never forget the look on her face when she accused me of thinking she’s useless. It will haunt me for the rest of my life.
Kaylan’s voice brings me back to reality. “So, we’re seeing there’s a balance that comes with caring for someone with an autoimmune disease, right?” She holds her hands up like a scale. “You don’t wanna dip too far into this side where you’re piling everything onto yourself with no help and you don’t want to be too far on this side where your attempt to care for them strips them of their independence.”
That’s exactly what I’ve done to Bailey. Without meaning to, I’ve stripped away a core part of who she is. If someone tried to tell me I couldn’t make art anymore, I’d make them pay.
Helena chimes in. “Maybe it’s a good thing we don’t know what to expect from this disease? At least that way we can’t expect the worst. I don’t know. That’s what I tell myself, but I don’t know if I really believe it.”
Maybe that’s how I should be looking at it. But that’s easier said than done.
Kaylan checks in with me after the meeting to see how I liked it and offers a few other resources to look into. I check my phone to see if Bailey has returned my calls and texts, but no such luck. What I’m not about to do is ambush her and try to force her into forgiving me, especially when I haven’t earned it, so I’ll respect her boundaries and give her space.
I approach Helena as she’s about to leave, wanting to pick her brain. We sit and talk about Bailey and Iris, finding common ground in the way we’ve approached their care at times. She offers a lot of helpful advice for how she’s coped, and I offer her insight into how Bailey is able to lead her life now, which makes her feel optimistic for Iris’s future.
I check my phone for any sign from Bailey to no avail, but I do have a message from Dani waiting for me when I leave group.
Dani: You are confirmed for your appointment at The Salon. Please arrive for your appointment at the designated time. Looking forward to seeing you.
